By Alex Burrell and Jonathan Ives
What is the study about?
Many parents in the United Kingdom care for offspring with autism spectrum disorder (ASD). Research with parents in the past has tended to focus on the experience of mothers, and there is a lack of research involving fathers. This research aimed to understand the experience of being a father of someone with ASD, with the intention of being able to help health and social care professionals understand fathers’ perspectives. By improving understanding about father’s experiences, more appropriate help and support can be developed and offered to fathers who want it.
Eight fathers took part in in-depth interviews, during which they talked about their experiences. Fathers talked about both rewarding and challenging aspects of being a father to someone with ASD, their experiences with service providers, and how they cope when things are difficult.
What were the results?
The journey and the destination
Fathers described their experiences as a ‘journey’ or a ‘path’ moving towards acceptance of ASD. This path began when they first realised their children were not developing normally. Diagnosis was a very challenging period, in which some felt as though they had lost the typically developing child they had expected. They felt lost at diagnosis and looked for information about ASD to try to develop knowledge about something they did not understand. As their children grew up, they experienced frustration and sometimes felt they reached their limits. They often felt embarrassed or judged in public. However, all fathers described reaching acceptance – the destination they felt their journey as a father had been moving towards. Acceptance of ASD reduced the difficult emotions, enabling them to reflect on the positive changes that having children with ASD had brought about in them, including being more tolerant, accepting and patient.
The aims of fatherhood
Fathers thought that helping their children become independent and be accepted by wider society was an important part of their role. This included teaching them life skills like personal hygiene, cooking and cleaning. For some fathers, employment for their children was an important long-term goal, but they often felt they needed to manage the expectations of their partners or children. Seeing their children be accepted by, and contribute to, society helped fathers themselves accept autism and feel less difficult emotions in public.
Battles and challenges
Fathers talked about battling against ‘the system’ when trying to access all the support they could for their children. This system was seen as ‘broken’, with many frustrating barriers. A lack of communication between different support services meant that each type of support they tried to access was a new battle. Fathers saw themselves as advocates for their children, and reflected on the qualities they needed for this role: confidence, education and articulacy, and expressed sympathy for people who may not have that skill set. Despite feeling they possessed these qualities, fathers in this study often felt ignored or misunderstood by professionals. As experts in their own children, fathers felt they should be listened to more by professionals involved in caring for their children.
Support for fathers?
The fathers in this study found different types of support useful. However, most of them shared the view that parent support groups were not useful to them for various reasons: they were too theoretical; had a victim mentality; or were an uncomfortable environment to open up in. They preferred informal support, with some fathers and their partners becoming their own mini support network. They described working in a ‘relay team’, providing their partner with respite when needed. Some fathers saw one of their main roles as giving their partner a break by doing activities with their children. Fathers varied how much they relied on, or involved, friends: some chose not to discuss ASD with their friends, whereas others changed their friendships based on how well their friends got on with their children. Friendships with other parents who had children with developmental disorders were especially valuable and allowed fathers to seek advice and express themselves honestly without feeling judged.
What are the implications of this research?
Fathers talked about experiencing frustration and anger, but also seemed reluctant to talk about these difficult emotions with either peers or professionals. For health and social care professionals, encouraging fathers to express their frustrations and feelings of grief, whilst reassuring them that these are normal emotions to experience, may help them move towards acceptance and reconcile their negative feelings with the positive aspects of fatherhood. For fathers in this project, it seemed that they could view their experience as a journey when looking back, but could not see it that way when they were in the middle of it. Fathers who are in the midst of their journey, but do not see their experience in those terms, may benefit from hearing the stories of fathers who have completed that journey and can reflect back on it with positivity.
More resources should be available for fathers at diagnosis to help them feel more supported at this time. A resource containing information on regional services available and how to access them would likely be useful. As their journey continues and fathers become experts in their children with ASD, health and social care professionals should make sure that fathers have been listened to, as part of the parenting team, when discussing their children’s needs. It may be easy to overlook both the needs and contributions of fathers, who may be less visible to health services. This is likely to require action from both professionals to engage fathers, and also from fathers to seek and be responsive to engagement.
Limitations of this research
It is important to recognize that this research project involved a small number of self-selected volunteers. Whilst the data are useful and provide us with insight into the experience of fathers, it is just one piece of a much larger jigsaw and the picture is far from complete.
Link to the primary paper
Burrell A, Ives J, Unwin G. The Experiences of Fathers Who Have Offspring with Autism Spectrum Disorder. J Autism Dev Disord. 2017 Apr;47(4):1135-1147 https://link.springer.com/article/10.1007%2Fs10803-017-3035-2
Co-author, Jonathan Ives is a Senior Lecturer in Biomedical Ethics and Law, and Deputy Director of the Centre for Ethics in Medicine, University of Bristol. Jon’s research interests are varied, but he has a particular interest in bioethics methodology, fatherhood and reproductive ethics, research ethics and, increasingly, mental health. He has published research on fatherhood and ethics, particularly around father’s interaction with health services and exploring what it means to be a ‘good’ father. He is currently developing a public engagement project called ‘Conversations with Fathers’ at the University of Bristol. He has two children, aged 5 and 7.